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Every moment, with Very Severe ME

Every moment is a moment of extreme limitationEvery moment is a moment of constant and severe physical tormentEvery moment is a moment of total constant continuous pain everywhereEvery moment is a moment of unpredictable reactionEvery moment is a moment of feeling severely ill.Every moment is a moment of numb limbs.Every moment is a moment that the environment is hostileEvery moment is a moment where noise is harmful, damaging and dangerous.Every moment light pierces and impacts painfully.Every moment is a moment that the world is inaccessible. Every moment the environment is hostile and unpredictable.Every moment is a movement away or towards paralysis.Every moment is a moment of inability.Every moment is a moment of brain fogged unreality.Every moment is a moment of difficulty interpreting incoming information.Every moment is a moment of physical difficulty.Every moment is a moment of physical distress.Every moment is a moment of profound disability.Every moment is a moment of need.Every moment is a moment of incomprehensible complexity.Every moment is a moment that harm and deterioration can be triggered instantly.Every moment is a moment where environmental stress can be catastrophic. Every moment is a moment of uncertainty.Every moment is a moment of challenge.Every moment is a moment of unutterable illness.Every moment is a moment where expression is incapacitated.Every moment is a moment where desire and ability do not match.Every moment is a moment where demand and expectation are unreasonable. Every moment is a moment open to misunderstanding.Every moment is a moment open to misinterpretation.Every moment is a moment open to distressing reactions.Every moment is a moment where you cannot do what you want to.Every moment is a moment of medical neglect.Every moment is a moment of fractured reality.Every moment is a moment of unpredictable experienceEvery moment is a moment of enforced isolation from normality.Every moment is a moment of separation from people.Every moment is a moment of desperation for stillness and quiet.Every moment is a moment that you do not know for certain what you can or cannot manage to cope with. Every moment is a moment where energy is dissipated, lost or suddenly gone.Every moment is a moment followed by deterioration and post- exertional reaction.Every moment is a moment you have to try and figure out what you need to survive.Every moment is a moment that needs to be totally flexible in approach and response.Every moment us a moment where you cannot predict what comes next.Every moment is a moment where you cannot rest because rest is unachievable.Every moment is a moment where you cannot rely on what you know, because something new and worse happens in your body for you to deal with.Every moment is a moment where you need help but cannot access it as you need it.Every moment is a nightmare of physical torture.Every moment is a moment of complex symptom interactions and underlying physical malfunction.Every moment is a moment where you do not know who is safe to trust.Every moment is a moment when the answers are not obvious.Every moment is a moment where the underlying disease has not been properly investigated. Every moment is a moment where systems fail you on some level.Every moment is a moment where you are overlooked and buried in a sea of fatigue language irrelevant to you.Every moment is a moment of impossibility.Every moment is a moment of broken communication pathways .Every moment is a moment of blocked pathways to ability and connection.Every moment is a moment of knowing that Very Severe ME is not on the political agenda.Every moment is a moment of knowing that Very Severe ME is not in most people's minds, awareness or experience.Every moment is a moment of knowing that there is no national universal biomedical response to people with Very Severe ME .Every moment is a moment where you know the government is not dealing with the vested interests underlying ME policy.Every moment is a moment where you know that the misinterpretation of ME as a fatigue illness leaves the most profoundly ill still open to mistreatment and at risk of harm.Every moment is a moment that you are waiting for proper medical validation and explanation that simply does not come. Every moment is a moment you pray you do not need additional medical interventions that you simply cannot engage with and that will harm you in trying.Every moment is a moment that people get further away from engaging with you.Every moment is a moment that you are less seen and known in your community.Every moment is a moment that your body does not feel ordinary or respond in ordinary ways to ordinary things. Every moment is a moment of knowing that people just don't get it.Every moment is a moment of knowing that people simply cannot comprehend or accommodate the severity of your illness. Every moment is a moment where, whether adult or child, you can be sectioned for a mental health illness that you don't have because of misinformation and lack of medical tests, treatments and knowledgeable consultants.Every moment is a moment you can be mislabelled and denied.Every moment is a moment that you simply do not know if you are dying and no one can tell you.Every moment is a moment of injustice.Greg & Linda Crowhurst 2013Stonebird : the lived experience of Severe ME

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Stonebird 27th July 2017 Sir Andrew Dillon, Chief Executive, NICE Dear Andrew Dillon, Re : Myalgic EncephalomyelitisI have cared full time, for 25 years, for my wife who has a diagnosis of Very Severe ME, my Nursing Standard article "Supporting people with severe myalgic encephalomyelitis" is referenced by NICE in the original 2007 guidelines. In 2015 I was third place finalist, BJN, Nurse of the Year, for which I received an award specifically for my work in raising awareness of and advocating
for people with Severe ME. I was Secretary of the 25% Severe ME Group charity for many years and represented the Group at the Gibson Parliamentary Inquiry. In February the Joint Commissioning Panel for Mental Health document published Guidance for Commissioners of services for people with medically unexplained symptoms – practical mental health commissioning, which misinformed Commissioners that Myalgic Encephalomyelitis is a Somatoform, mental health disorder. The response, in a letter to me…

Stonebird Greg Crowhurst Aug 30th 2017 On July 27, I wrote to Sir Andrew Dillon re Myalgic Encephalomyelitis. This is NICE’s reply, dated 29th August. I have added the questions I asked and made some brief comments. Thank you for contacting the National Institute for Health and Care Excellence (NICE) regarding our guideline on chronic fatigue syndrome/myalgic encephalomyelitis (or encephalopathy):
diagnosis and management (CG53), Sir Andrew Dillon has asked the corporate communications team to respond on his behalf. I appreciate that this is an important matter for you and I have addressed of your questions in turn below. In March this year we advised you by email that we were unable to comment on how another organisation interprets our guideline and this is still the case. If the JCPMH have referred
to our guideline in a different way then you would need to take this point up with them directly, NICE is unable to get involved. Comment: Despite my best efforts, letters to the Department o…

The
Joint Commisioning Panel for Mental Health has recently published
"Guidance
for commissioners of services for people with medically unexplained
symptoms,specifically listing Myalgic Encephalomyelitis as a "Functional Somatic Disorder". This
is not the first time that an incorrect reclassification has been
attempted. In October
2001 an
attempt was made to have ME ‘unofficially’
reclassified, as a mental disorder in a U.K adaptation of a WHO
publication, the ‘WHO Guide to Mental Health in Primary Care’, developed by the Collaborating Centre of the Institute of
Psychiatry, London and included under the classification F48.0
“Unexplained
medical symptoms.”

After a reprimand from the WHO, an erratum was eventually issued,
acknowledging that the
wrong classification.

For
anyone wishing to challenge this report, the following may be of
interest.
Background
Myalgic
Encephalomyelitis (ME) has
been recognised
by the World Health Organisation since
1969
as an organic neuro…